ABOUT THE SPEAKER
Lucy Kalanithi - Caregiver
Lucy Kalanithi is dedicated to helping others choose the health care and end-of-life experiences that best align with their values.

Why you should listen

Stanford internist Lucy Kalanithi is the widow of neurosurgeon and writer Paul Kalanithi, who was diagnosed with Stage IV lung cancer at age 36. Shortly after his diagnosis, Paul wrote about his transformation from doctor to patient, and explored what makes life worth living in the face of death in his poignant memoir When Breath Becomes Air. After Paul died in 2015, Lucy completed his memoir and wrote its powerful epilogue. As a caregiver for her husband during all phases of his illness and as a practicing physician and a thinker on healthcare value, Lucy is dedicated to helping others choose the health care and end-of-life experiences that best align with their values. She lives in the Bay Area with her and Paul’s daughter, Cady.

More profile about the speaker
Lucy Kalanithi | Speaker | TED.com
TEDMED 2016

Lucy Kalanithi: What makes life worth living in the face of death

Filmed:
2,258,354 views

In this deeply moving talk, Lucy Kalanithi reflects on life and purpose, sharing the story of her late husband, Paul, a young neurosurgeon who turned to writing after his terminal cancer diagnosis. "Engaging in the full range of experience -- living and dying, love and loss -- is what we get to do," Kalanithi says. "Being human doesn't happen despite suffering -- it happens within it."
- Caregiver
Lucy Kalanithi is dedicated to helping others choose the health care and end-of-life experiences that best align with their values. Full bio

Double-click the English transcript below to play the video.

00:12
A few days after my husband Paul
was diagnosed with stage IV lung cancer,
0
960
6376
00:19
we were lying in our bed at home,
1
7360
2496
00:21
and Paul said,
2
9880
1776
00:23
"It's going to be OK."
3
11680
1200
00:26
And I remember answering back,
4
14040
2496
00:28
"Yes.
5
16560
1216
00:29
We just don't know what OK means yet."
6
17800
3760
00:35
Paul and I had met as first-year
medical students at Yale.
7
23320
3496
00:38
He was smart and kind and super funny.
8
26840
3440
00:42
He used to keep a gorilla suit
in the trunk of his car,
9
30880
3816
00:46
and he'd say, "It's for emergencies only."
10
34720
2416
00:49
(Laughter)
11
37160
1200
00:51
I fell in love with Paul as I watched
the care he took with his patients.
12
39200
3720
00:55
He stayed late talking with them,
13
43400
2176
00:57
seeking to understand
the experience of illness
14
45600
3456
01:01
and not just its technicalities.
15
49080
2120
01:04
He later told me he fell in love with me
16
52560
2216
01:06
when he saw me cry over an EKG
of a heart that had ceased beating.
17
54800
5040
01:13
We didn't know it yet,
18
61120
1536
01:14
but even in the heady days of young love,
19
62680
3136
01:17
we were learning how
to approach suffering together.
20
65840
3120
01:22
We got married and became doctors.
21
70840
2376
01:25
I was working as an internist
22
73240
2016
01:27
and Paul was finishing his training
as a neurosurgeon
23
75280
4056
01:31
when he started to lose weight.
24
79360
1640
01:34
He developed excruciating back pain
and a cough that wouldn't go away.
25
82480
4920
01:40
And when he was admitted to the hospital,
26
88400
2136
01:42
a CT scan revealed tumors
in Paul's lungs and in his bones.
27
90560
4080
01:48
We had both cared for patients
with devastating diagnoses;
28
96640
3600
01:53
now it was our turn.
29
101200
2360
01:58
We lived with Paul's illness
for 22 months.
30
106720
2600
02:01
He wrote a memoir about facing mortality.
31
109920
2520
02:05
I gave birth to our daughter Cady,
32
113320
2160
02:08
and we loved her and each other.
33
116240
1680
02:10
We learned directly how to struggle
through really tough medical decisions.
34
118720
4640
02:17
The day we took Paul
into the hospital for the last time
35
125320
3575
02:20
was the most difficult day of my life.
36
128919
2041
02:24
When he turned to me at the end
37
132560
1976
02:26
and said, "I'm ready,"
38
134560
2480
02:31
I knew that wasn't just a brave decision.
39
139000
2680
02:34
It was the right one.
40
142280
1320
02:36
Paul didn't want a ventilator and CPR.
41
144680
2880
02:40
In that moment,
42
148360
1496
02:41
the most important thing to Paul
43
149880
2600
02:45
was to hold our baby daughter.
44
153560
1680
02:49
Nine hours later,
45
157240
1816
02:51
Paul died.
46
159080
1200
02:55
I've always thought of myself
as a caregiver --
47
163960
2256
02:58
most physicians do --
48
166240
2056
03:00
and taking care of Paul
deepened what that meant.
49
168320
2800
03:04
Watching him reshape
his identity during his illness,
50
172120
3616
03:07
learning to witness and accept his pain,
51
175760
3496
03:11
talking together through his choices --
52
179280
2536
03:13
those experiences taught me
53
181840
1416
03:15
that resilience does not mean
bouncing back to where you were before,
54
183280
5256
03:20
or pretending that
the hard stuff isn't hard.
55
188560
2680
03:24
It is so hard.
56
192120
2000
03:27
It's painful, messy stuff.
57
195160
3280
03:31
But it's the stuff.
58
199320
1416
03:32
And I learned that when we
approach it together,
59
200760
3240
03:37
we get to decide what success looks like.
60
205120
3680
03:43
One of the first things
Paul said to me after his diagnosis was,
61
211080
3320
03:47
"I want you to get remarried."
62
215360
1520
03:50
And I was like, whoa, I guess
we get to say anything out loud.
63
218480
3336
03:53
(Laughter)
64
221840
2536
03:56
It was so shocking
65
224400
2056
03:58
and heartbreaking ...
66
226480
1800
04:01
and generous,
67
229440
1216
04:02
and really comforting
68
230680
1496
04:04
because it was so starkly honest,
69
232200
2576
04:06
and that honesty turned out
to be exactly what we needed.
70
234800
3120
04:10
Early in Paul's illness,
71
238760
1696
04:12
we agreed we would
just keep saying things out loud.
72
240480
3360
04:17
Tasks like making a will,
73
245400
2296
04:19
or completing our advance directives --
74
247720
2656
04:22
tasks that I had always avoided --
75
250400
2576
04:25
were not as daunting as they once seemed.
76
253000
2280
04:28
I realized that completing
an advance directive is an act of love --
77
256040
4359
04:33
like a wedding vow.
78
261480
1560
04:35
A pact to take care of someone,
79
263720
2256
04:38
codifying the promise
80
266000
2296
04:40
that til death do us part,
81
268320
1920
04:43
I will be there.
82
271240
1240
04:45
If needed, I will speak for you.
83
273960
2440
04:49
I will honor your wishes.
84
277200
2280
04:53
That paperwork became
a tangible part of our love story.
85
281280
3360
04:59
As physicians,
86
287040
1216
05:00
Paul and I were in a good position
87
288280
1656
05:01
to understand and even
accept his diagnosis.
88
289960
3160
05:06
We weren't angry about it,
89
294120
1336
05:07
luckily,
90
295480
1216
05:08
because we'd seen so many patients
in devastating situations,
91
296720
4136
05:12
and we knew that death is a part of life.
92
300880
2680
05:17
But it's one thing to know that;
93
305880
1576
05:19
it was a very different experience
94
307480
1656
05:21
to actually live with the sadness
and uncertainty of a serious illness.
95
309160
4480
05:26
Huge strides are being made
against lung cancer,
96
314720
3216
05:29
but we knew that Paul likely had
months to a few years left to live.
97
317960
4760
05:36
During that time,
98
324720
1216
05:37
Paul wrote about his transition
from doctor to patient.
99
325960
2800
05:41
He talked about feeling
like he was suddenly at a crossroads,
100
329680
4056
05:45
and how he would have thought
he'd be able to see the path,
101
333760
2800
05:49
that because he treated so many patients,
102
337320
2736
05:52
maybe he could follow in their footsteps.
103
340080
2280
05:55
But he was totally disoriented.
104
343280
1800
05:58
Rather than a path,
105
346440
1776
06:00
Paul wrote,
106
348240
1496
06:01
"I saw instead
107
349760
2056
06:03
only a harsh, vacant,
gleaming white desert.
108
351840
4160
06:08
As if a sandstorm
had erased all familiarity.
109
356720
3160
06:13
I had to face my mortality
110
361160
1840
06:16
and try to understand
what made my life worth living,
111
364000
3600
06:20
and I needed my oncologist's
help to do so."
112
368680
3480
06:27
The clinicians taking care of Paul
113
375440
2056
06:29
gave me an even deeper appreciation
for my colleagues in health care.
114
377520
4216
06:33
We have a tough job.
115
381760
1976
06:35
We're responsible for helping patients
have clarity around their prognoses
116
383760
4776
06:40
and their treatment options,
117
388560
1976
06:42
and that's never easy,
but it's especially tough
118
390560
2496
06:45
when you're dealing with potentially
terminal illnesses like cancer.
119
393080
3680
06:50
Some people don't want to know
how long they have left,
120
398320
3696
06:54
others do.
121
402040
1200
06:55
Either way, we never have those answers.
122
403840
2480
07:00
Sometimes we substitute hope
123
408200
2840
07:04
by emphasizing the best-case scenario.
124
412080
2360
07:08
In a survey of physicians,
125
416320
2096
07:10
55 percent said
they painted a rosier picture
126
418440
4816
07:15
than their honest opinion
127
423280
1456
07:16
when describing a patient's prognosis.
128
424760
1960
07:19
It's an instinct born out of kindness.
129
427960
2720
07:24
But researchers have found
130
432120
1416
07:25
that when people better understand
the possible outcomes of an illness,
131
433560
5216
07:30
they have less anxiety,
132
438800
1520
07:33
greater ability to plan
133
441080
1760
07:35
and less trauma for their families.
134
443840
2320
07:40
Families can struggle
with those conversations,
135
448800
2736
07:43
but for us, we also found that information
immensely helpful with big decisions.
136
451560
6480
07:50
Most notably,
137
458920
1200
07:53
whether to have a baby.
138
461040
1200
07:56
Months to a few years meant
Paul was not likely to see her grow up.
139
464800
4960
08:02
But he had a good chance
of being there for her birth
140
470840
2496
08:05
and for the beginning of her life.
141
473360
1640
08:08
I remember asking Paul
142
476640
1976
08:10
if he thought having
to say goodbye to a child
143
478640
3376
08:14
would make dying even more painful.
144
482040
2520
08:18
And his answer astounded me.
145
486400
1856
08:20
He said,
146
488280
1696
08:22
"Wouldn't it be great if it did?"
147
490000
2240
08:28
And we did it.
148
496040
1200
08:29
Not in order to spite cancer,
149
497840
2560
08:33
but because we were learning
150
501520
1856
08:35
that living fully
means accepting suffering.
151
503400
5160
08:43
Paul's oncologist tailored his chemo
152
511880
2416
08:46
so he could continue
working as a neurosurgeon,
153
514320
3296
08:49
which initially we thought
was totally impossible.
154
517640
2440
08:53
When the cancer advanced
155
521520
1296
08:54
and Paul shifted from surgery to writing,
156
522840
2520
08:58
his palliative care doctor
prescribed a stimulant medication
157
526200
3336
09:01
so he could be more focused.
158
529560
1600
09:04
They asked Paul about
his priorities and his worries.
159
532600
3680
09:09
They asked him what trade-offs
he was willing to make.
160
537080
3640
09:14
Those conversations
are the best way to ensure
161
542480
4136
09:18
that your health care matches your values.
162
546640
3880
09:24
Paul joked that it's not
like that "birds and bees" talk
163
552280
2656
09:26
you have with your parents,
164
554960
1336
09:28
where you all get it over with
as quickly as possible,
165
556320
2536
09:30
and then pretend it never happened.
166
558880
1696
09:32
You revisit the conversation
as things change.
167
560600
2896
09:35
You keep saying things out loud.
168
563520
2920
09:40
I'm forever grateful
169
568400
1256
09:41
because Paul's clinicians felt
170
569680
2376
09:44
that their job wasn't to try
to give us answers they didn't have,
171
572080
3096
09:47
or only to try to fix things for us,
172
575200
3376
09:50
but to counsel Paul
through painful choices ...
173
578600
2800
09:54
when his body was failing
but his will to live wasn't.
174
582320
5000
10:01
Later, after Paul died,
175
589440
1560
10:03
I received a dozen bouquets of flowers,
176
591960
2696
10:06
but I sent just one ...
177
594680
1520
10:09
to Paul's oncologist,
178
597080
2056
10:11
because she supported his goals
179
599160
3456
10:14
and she helped him weigh his choices.
180
602640
2560
10:18
She knew that living
means more than just staying alive.
181
606520
4680
10:25
A few weeks ago,
a patient came into my clinic.
182
613720
2896
10:28
A woman dealing
with a serious chronic disease.
183
616640
3160
10:32
And while we were talking
about her life and her health care,
184
620880
2896
10:35
she said, "I love my palliative care team.
185
623800
3480
10:40
They taught me that it's OK to say 'no'."
186
628160
2040
10:43
Yeah, I thought, of course it is.
187
631640
1800
10:46
But many patients don't feel that.
188
634840
2240
10:50
Compassion and Choices did a study
189
638840
2136
10:53
where they asked people
about their health care preferences.
190
641000
3200
10:56
And a lot of people
started their answers with the words
191
644760
4056
11:00
"Well, if I had a choice ..."
192
648840
1440
11:04
If I had a choice.
193
652040
1560
11:06
And when I read that "if,"
194
654880
1896
11:08
I understood better
195
656800
2176
11:11
why one in four people
196
659000
2856
11:13
receives excessive or unwanted
medical treatment,
197
661880
4856
11:18
or watches a family member receive
excessive or unwanted medical treatment.
198
666760
5160
11:25
It's not because doctors don't get it.
199
673600
2096
11:27
We do.
200
675720
1200
11:29
We understand the real
psychological consequences
201
677520
2936
11:32
on patients and their families.
202
680480
2360
11:35
The things is, we deal with them, too.
203
683760
1840
11:38
Half of critical care nurses
and a quarter of ICU doctors
204
686720
5336
11:44
have considered quitting their jobs
205
692080
2536
11:46
because of distress over feeling
that for some of their patients,
206
694640
4896
11:51
they've provided care
that didn't fit with the person's values.
207
699560
3400
11:57
But doctors can't make sure
your wishes are respected
208
705400
2496
11:59
until they know what they are.
209
707920
2200
12:04
Would you want to be on life support
if it offered any chance of longer life?
210
712000
3720
12:09
Are you most worried
about the quality of that time,
211
717000
3616
12:12
rather than quantity?
212
720640
1200
12:14
Both of those choices
are thoughtful and brave,
213
722720
3280
12:19
but for all of us, it's our choice.
214
727200
1840
12:22
That's true at the end of life
215
730200
1720
12:24
and for medical care throughout our lives.
216
732920
2576
12:27
If you're pregnant,
do you want genetic screening?
217
735520
2856
12:30
Is a knee replacement right or not?
218
738400
1920
12:33
Do you want to do dialysis
in a clinic or at home?
219
741600
3320
12:38
The answer is:
220
746600
1200
12:40
it depends.
221
748640
1200
12:42
What medical care will help you
live the way you want to?
222
750560
4480
12:49
I hope you remember that question
223
757080
2216
12:51
the next time you face
a decision in your health care.
224
759320
3160
12:55
Remember that you always have a choice,
225
763200
3040
12:59
and it is OK to say no to a treatment
that's not right for you.
226
767240
5720
13:06
There's a poem by W.S. Merwin --
227
774600
3376
13:10
it's just two sentences long --
228
778000
2296
13:12
that captures how I feel now.
229
780320
2120
13:17
"Your absence has gone through me
230
785000
3096
13:20
like thread through a needle.
231
788120
2520
13:23
Everything I do
is stitched with its color."
232
791800
3480
13:29
For me that poem evokes my love for Paul,
233
797480
3280
13:33
and a new fortitude
234
801520
1976
13:35
that came from loving and losing him.
235
803520
3040
13:40
When Paul said, "It's going to be OK,"
236
808360
2400
13:44
that didn't mean
that we could cure his illness.
237
812000
3680
13:48
Instead, we learned to accept
both joy and sadness at the same time;
238
816600
5520
13:55
to uncover beauty and purpose
239
823240
3296
13:58
both despite and because we are all born
240
826560
4160
14:03
and we all die.
241
831520
1200
14:06
And for all the sadness
and sleepless nights,
242
834520
2560
14:09
it turns out there is joy.
243
837880
1440
14:12
I leave flowers on Paul's grave
244
840440
2616
14:15
and watch our two-year-old
run around on the grass.
245
843080
2720
14:19
I build bonfires on the beach
and watch the sunset with our friends.
246
847240
4600
14:25
Exercise and mindfulness
meditation have helped a lot.
247
853520
3760
14:30
And someday,
248
858800
1296
14:32
I hope I do get remarried.
249
860120
1560
14:36
Most importantly,
I get to watch our daughter grow.
250
864560
2760
14:40
I've thought a lot
about what I'm going to say to her
251
868720
3896
14:44
when she's older.
252
872640
1240
14:48
"Cady,
253
876400
1200
14:50
engaging in the full
range of experience --
254
878760
3216
14:54
living and dying,
255
882000
1696
14:55
love and loss --
256
883720
1480
14:58
is what we get to do.
257
886040
1280
15:01
Being human doesn't happen
despite suffering.
258
889080
5040
15:07
It happens within it.
259
895680
1280
15:10
When we approach suffering together,
260
898960
1720
15:13
when we choose not to hide from it,
261
901600
2080
15:17
our lives don't diminish,
262
905080
1416
15:18
they expand."
263
906520
1200
15:21
I've learned that cancer
isn't always a battle.
264
909880
2720
15:26
Or if it is,
265
914400
1656
15:28
maybe it's a fight for something
different than we thought.
266
916080
3000
15:32
Our job isn't to fight fate,
267
920640
2360
15:36
but to help each other through.
268
924160
1720
15:39
Not as soldiers
269
927280
1520
15:42
but as shepherds.
270
930000
1200
15:45
That's how we make it OK,
271
933920
2056
15:48
even when it's not.
272
936000
1480
15:51
By saying it out loud,
273
939080
1360
15:53
by helping each other through ...
274
941400
1960
15:57
and a gorilla suit never hurts, either.
275
945360
1880
16:00
Thank you.
276
948280
1216
16:01
(Applause)
277
949520
7096

▲Back to top

ABOUT THE SPEAKER
Lucy Kalanithi - Caregiver
Lucy Kalanithi is dedicated to helping others choose the health care and end-of-life experiences that best align with their values.

Why you should listen

Stanford internist Lucy Kalanithi is the widow of neurosurgeon and writer Paul Kalanithi, who was diagnosed with Stage IV lung cancer at age 36. Shortly after his diagnosis, Paul wrote about his transformation from doctor to patient, and explored what makes life worth living in the face of death in his poignant memoir When Breath Becomes Air. After Paul died in 2015, Lucy completed his memoir and wrote its powerful epilogue. As a caregiver for her husband during all phases of his illness and as a practicing physician and a thinker on healthcare value, Lucy is dedicated to helping others choose the health care and end-of-life experiences that best align with their values. She lives in the Bay Area with her and Paul’s daughter, Cady.

More profile about the speaker
Lucy Kalanithi | Speaker | TED.com